Raising A Child With Special Needs

If you are a parent of a child with special needs, there may be days where you feel all alone in a battle. Perhaps taking care of your child’s needs has become overpowering, in addition to the rest of your family, that you have not taken the break to pursue reassurance from those who trudge along the same roads as you. No matter if you’re raising a child with emotional challenges, or various physical inabilities, we hope you’ll find comfort in today’s post.  Deanna “Squeaky” Miller ; wife, singer, and mom, is living the joys and trials of raising a brilliant child that happens to have special needs.

 

Tell us a little about yourself and your family. When did you first learn that your child/children had a disability and what was your reaction?

Greetings I am Deanna Miller, affectionately known as Squeaky (all about the speaking voice lol). I am an independent artist, singer, songwriter, and performer. I was born and raised in Tallahassee by a wonderful-loving family, who nurtured me into a woman of faith, serving my community with love through music, which is where the singing part comes in. I am married to a beautiful man, Henry for 13 years, and we have three gifted children, Kharizma 20, Julius 11, and Joe’l 10.

Julius is our oldest son and lives with the challenges of Autism. He was diagnosed by the Leon county schools at the age of 5. It was difficult! A year went by before I was able to wrap my mind around the word “autistic”. We didn’t understand how he got this, or how to cure him of it. I remember crying for days, blaming my body, as if I knew exactly how he became this way! We had no clue or real blame! A long road was ahead, we were terrified of not knowing how to help Julius.

In raising a child with special needs, how often do you make time for you? How do you do this? Do you have a support team?

Often….Pouring myself into my music provides a place of peace. I sing a lot around the city, and sharing my voice is me-time. My husband and other two kids are very supportive and will give me a break when I say I need it. They have great relationships with Julius, so it makes it easier for me to get away for a few hours.

Being an at-home mom is hard work and can be very tedious…. I pace myself! If it’s not a priority? I do not worry about it. Julius is in public school, so I get some down time then, and he receives in-home therapy several days per week. I have a great support circle of family and friends, too!

Do you practice therapy at home? What are some activities that you/your family do?

Yes, as I stated in my prior response, Julius receives in-home therapy several days per week. I do remain consistent with some of the exercises daily to help him communicate better, and transition from one activity to the next without difficulties. Music, books, drawings, movies, and games are our main ways of engaging with Julius. He is a cartoonist, with gifted drawing skills and loves to act out animated characters, so you can imagine the level of voice over talent in this family lol.

Therapy is the key point to managing autistic behavior, communication, and socializing. Find what they like and use it to connect with them. The challenges are still there but you learn how to handle them successfully.

What do you do about unexpected behaviors or tantrums? Do you worry that your other children may feel you are unfair to them? 

Unfortunately, the disability to communicate every emotion is the most frustrating challenge for an autistic person. Even those whom are verbal may have this challenge. Most will use tantrums to express sadness, anger, and even a disagreement with something or someone. Depending on the situation, Julius will scream and/or speak rude phrases, sometimes attempt to self-inflict harm to his body, with hitting, to express his anger, sadness, or disapproval. BUT because I am well aware of his body language and triggers, I can intervene. Starting with a calm voice, I acknowledge his feeling. This lets him know he’s not being ignored! Then I use deep breathing, while hugging him tight, to calm him. Sensory massages are very effective to help the body relax. While hugging, we discuss the problem. I will ask him to repeat what I say, giving him verbal understanding that what he wants can or cannot happen with explanation. It’s very important to use words that specify time (ex: before, after, first, then) Now, there are times when this does not work, and I have to let him get those feelings out, supervising his physical behavior to make sure he’s not hurting himself, or anyone else.

Our other two children are not on the spectrum, so creating a balance of affection and attention, equally is priority in our home. The way we tackle that task is to do a lot of family time. Group hugs, kisses, discussions, and prayer are some of the things we do. They are very involved with Julius therapy sessions, too! Joe’l plays well with Julius and Kharizma having a background as a CNA helps care for him when we are not around. It’s important to give personal time to them, too! No matter what it is, playing a game of their choice or singing a song with them? We make sure they receive equal amount of attention and love.

One of the biggest hopes for families is that their child will be able to function within society. What are steps that you take to prepare your child for adulthood and independence? (Some parents practice Community Based Instruction)

I’m going to be extra candid with this question lol! A few weeks ago, my daughter and youngest son asked this question, “Who will be responsible for Julius when you and Daddy are no longer able to care for him?” Now, at face-value I told them that they don’t have to worry about that because I’m living to see 90 lol, but I must admit that I have a silent fear of that possibility. I mean, you must trust family and close-friends to stand in your place and continue the life services you’ve provided for your special needs love one, with the unselfishness that comes with it!

Julius is independent to a certain degree. He has hygiene, dressing himself, and self-feeding mastered! But as for the more complicated things, that we know he’s not able to do, the lessons CBI can’t teach him because he’s not comprehending, is what I worry about most! I’ve been researching group homes and other alternatives to have in place for him if and when that time comes.

But at the age of 11 (soon to be 12 next week) Julius has surpassed the goals that have been set for him, so I continue to be hopeful that independence for him is not limited. He’s a very intelligent young man.

What are some heartbreaking choices you’ve had to make as a parent and making sure your child receives the proper support and care?

I will have to say school choice, and not medicating our son. You want to make sure your child isn’t just placed in a daycare setting, where no one is educating him. It was priority for Julius to learn in an environment that can teach him, and unfortunately the school that diagnosed him weren’t equipped to teach him long term. We had to decide to transfer him to a different school. Because we are involved parents, our demands for Julius to get the best care and education was heard. He is presently in a CBI (Community Based Instruction) program, in middle school where the concerns are higher, because he’s among teenagers. I don’t believe any parent can trust the school system 100% to treat their special needs child the way they do. But I thank God for the educators who look out for our son and treats him well. He is liked by his peers and amazes them with his gift of drawing. We have experienced some mishaps, but they were without casualties to Julius. He is a straight A student.

I knew I couldn’t learn my son’s needs if he was on behavioral medication. It was necessary to witness Julius in his organic manner and determine what services will be sufficient. He has never been medicated for his autistic behavior, and to this day we continue to use therapy, and holistic methods of medicine like essential oils and certain foods.

How do you celebrate the small victories?

A “high-five” followed by a song of choice is the norm around here hahaha! Julius loves the simple things, so sometimes we will treat him to the Dollar Store, or he will receive extra television time. We celebrate a lot!!! Every milestone is a big deal!

What are two important things that parents need to hear when they have children with special needs?

  1. I will quote what has been said to me….” God gave Julius the right parents.”
  2. “Julius is an intelligent boy!”

Those two things gave me hope in knowing Julius will be just fine

deanna Photo credit: Deanna “Squeaky” Miller

I hope that you found tips and tools in the areas of schooling, balancing the needs of your disabled child and the needs of your other children, coping when your circumstances have become too hard, and encouragement in developing friendships

Autism Facts:

-Autism is known as a “spectrum” disorder because there is wide variation in the type and severity of symptoms people experience.

-Autism spectrum disorder (ASD) is a developmental disorder that affects communication and behavior. Although autism can be diagnosed at any age, it is said to be a “developmental disorder” because symptoms generally appear in the first two years of life.

-A person with Autism has:

  • Difficulty with communication and interaction with other people
  • Restricted interests and repetitive behaviors
  • Symptoms that hurt the person’s ability to function properly in school, work, and other areas of life
-While scientists don’t know the exact causes of ASD, research suggests that genes can act together with influences from the environment to affect development in ways that lead to ASD. Although scientists are still trying to understand why some people develop ASD and others don’t, some risk factors include:
  • Having a sibling with ASD
  • Having older parents
  • Having certain genetic conditions—people with conditions such as Down syndrome, fragile X syndrome, and Rett syndrome are more likely than others to have ASD
  • Very low birth weight
-ASD is reported to occur in all racial, ethnic, and socioeconomic groups.

-ASD is about 4 to 5 times more common among boys than among girls

– Autism is one of the fastest-growing developmental disorders in the U.S.

Resource:

https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd/index.shtml

Tempo

Tempo

You hit the ground running at birth

The joys of a young life to this earth.

You’re told to catch life’s pace

To hold on in this dying race;

Meek are The hearers,

Blessings to the doers;

The mountain movers.

Holding on to your chest

Trying to find inner rest

Work harder…be perfect

Do perfect

Measure up.

Throw up

Lies, heartbreak, and sudden fates.

But…hold on, carry these weights.

Fatigue

As the liquor drowns you…

Smoke Succumbs your smile

Depression invites you to just stay HERE, right here, for a while.

Mirrors reflect someone you never knew, someone you never deemed honorable to love.

Counting bodies who played under you.

Pretenses.

Brain always triggered for defensive.

The human heart, merely an organ.

At any sense, I blame the Olympian firmament.

For creating this competition that we we were never born to live forever.

A tournament of the spirit; no foot lever.

electrons and atoms…

Rhythm, electricity

All at a drum beat.

300 meters per second

Ions pacing, connecting

Beckoned from the moment we are conceived

Everything is everything and yet nothing.

-By Ashley Viewins

Beating the “Summer Slide”

As many of you know, I am a teacher and many people expect that I would have my children enrolled in the very best camps but that is just NOT the case.  We wake at 4:30am to commute to work by 6:45am every morning.  Much of the school year is spent rushing and being too exhausted.  My goal is always to make the most out of summer and allow my 3rd grader to explore and learn simultaneously.

Statistically, during the summer children lose almost half of what they learned during the summer.  Many teachers spend the first two months of school reintroducing students to what they covered last year and reviewing organizational skills.

 

 

  • Read

 

Get your kids hands on anything that they can read.  Reading with your kids help them achieve in all subject areas, provides intellectual escape, and increases background knowledge.  From Pre-K to adult-hood, reading is important.  Let your kiddies pick books that are one grade level ahead of their Lexile/fluency and if that is too hard, move downward until they make progress.

 

Education.com (Great for Math in all grades)

Newsela.com

 

  • Experiments/Examinations/DIY

 

From nature walks to cooking in the kitchen.  Allow your children to investigate and form predictions.  Creating observation charts or a presentation/drawing of what they found or cooked is a great idea.

 

http://science.dadeschools.net/elem/documents/profDev/leadersSession-5-Feb-2013/Vocabulary_PP%20for%20Science%20Leaders/Science%20Graphic%20Organizers.pdf

 

  • Virtual Fieldtrips/Museums and cultural studies

Use the internet to help your kiddos explore the world right from home.  You can also get out of the house and visit your local museums and historical sites.  Search Google to find local historical landmarks and museums to help you.

http://www.discoveryeducation.com/Events/virtual-field-trips/explore/

 

  • Assessment Preparation

 

This is extremely important for High school students.  ACT/SAT preparation is extremely important for students who have yet to pass the FSA and/or plan to go to college.   11th graders should begin to prepare for the ACT/SAT by visiting their website.  Introducing students early to this test will strengthen their chances of passing and increase their confidence.

 

http://www.act.org/content/act/en/products-and-services/the-act/test-preparation.html

Collegeboard.org

https://www.khanacademy.org/sat

 

 

 

  • Writing Activities

 

Encourage kiddos of all ages to practice writing and learning to form complete sentences that restate the question/topic within their answers.

 

ReadWriteThink

http://www.readwritethink.org/search/?grade=8-12&resource_type=70

Here is a clip of a summer portfolio that I did for my daughter who is entering the 3rd grade next year.  I printed all the material from the links that were included in the post and I also visited my local Dollar General Store.

If you have any questions on resources or materials send me an email or leave a comment.

 

-Ciao!

Host A Guest Blog: Do You Illicitly Admire Your Partner?

As I read “What Do You Secretly Admire About Your Partner?” by Psychologytoday.com, I decided to be deliberate about figuring out what I liked about my companion, I grasped that his weaknesses and strengths were all one and I would have to learn to identify and communicate exactly what I felt and work on a balance.

Recently our focus has been on a “us marriage” instead of a “you and me marriage”, identifying how our family histories inform our present behaviors, and how to navigate conflict well.  As I thought and prayed, I received a message….my spouse’s strengths and weaknesses are uniquely designed for me.

My spouse worked well under pressure, if something didn’t work he was looking to solve the problem, he’s compassionate, and can make others feel comfortable.

When I thought about his weaknesses, I completely shut down.  I knew that there was no way that I could negotiate or train away them. Dealing with flaws and strengths was a personal journey that he and I would have to make individually and then come together on one accord.  As humans, we are sure to stumble and fall, there is no such thing as a perfect person…would I be willing to take the good with the bad…could I learn to?  Marriage is inherently difficult, and we could not resent it but receive the difficulties.  Was there something in my spouse that was willing to go through the difficulties with me?

 

When the honey moon phase is over in a relationship, we in fact come to terms with who we really are and often, we find out who our spouse is.  Our strengths and weaknesses are often one and the same.  The very things that our partner fell in love with are some of the very same things that in turn could bother them.  For example, your partner may be prone to pessimism (no one likes a negative person) and always expects things to fall apart but he always has a Plan B to fix things (a positive).

In our relationships, the very things that drive us insane about our romantic partner are often associated with underlying strengths that the person has.  –psychologytoday.com

 

 

In examining myself and the different stress responses, my reaction to stressful situations or conflict is fight mode.  In fight mode, my initial reaction is fear and not love.  When overwhelmed with excessive stress, life becomes a series of short-term emergencies. I lose the ability to relax and enjoy the moment.  A “burnout” is inevitable.  My spouse on the other hand is freeze mode and flight mode.  In these moments, we find each other to be so frustrating but the positive to this is that – fighters are confrontational, but in other circumstances I am often assertive and a strong decision maker.  My spouse might tend to retreat, but in other circumstances he is very accommodating, flexible, patient, and a very strategic problem solver. 

After being in unhealthy relationships, for the first time I realized I didn’t have to fight any more.  In watching him, I saw that being confrontational was something that I didn’t have to be.  His patience with others was something that I had always admired.

My family challenges my want for control and often pushes me to shift my perspective to focus on what’s most important.  The small things can often build into mounds if not pruned but understanding that people and situations are not perfect; I see how God can use weaknesses to create something positive in others…in me.

-that was FREEING.

MINIMALISM: Be More With Less

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SIMPLE IS SMARTER.

Beginning In October, my daughter had her 8th birthday.  She loves seafood, macaroons, and her Goddie (God-mother), so we decided that her Goddie would come to town (two hours away) and we would take her out for seafood and macaroons.  My daughter frowned and looked somber the whole entire time.  I was so embarrassed at how ungrateful she became because they did not have raw oysters (yeah I know what you are thinking). Now, Christmas has past…and not ONE of the toys that was bought, was thought of a week after Christmas but a few!  She’s begging for more toys and doesn’t take care of the ones she has and doesn’t clean her room.  Granted she’s on the A/B honor roll, her concept of being entitled has got to stop.  So I have to begin with myself and then her.

WHY MINIMALISM IS BETTER.

As a child, I didn’t have tons of toys but I did not want for things to play with.  I learned the magic of venturing out doors and a love for my imagination with my cousins, my daughter, on the other hand, is entertained at the thought of watching children play with toys on YouTube; annoying right?!    She has the type of closet that you often open at your own risk.  I thought “she is  just messy” but in actuality my closet looks the exact same way today and I need to teach her how to clean her room properly and throw away things that she does not need any more and donate toys/clothes to others.  “Convenience parenting” has apps and tablets for keeping children quiet or reminding them to clean up their rooms.  I want to raise children who can retain information when told, who can complete tasks without being prompted, and who are grateful for what they do have.

As a teacher, I understand the logic and practices of what makes children thrive and as I continue to grow within my pedagogy, I realize that most children need minimalism.  Minimalism is not always cleaning up or giving away your things as charitable donations.  Minimalism is about focusing your family on what is important in life.

In pursuit to minimalize our life, I am focusing on these key concepts:

  • Choosing Gratitude:  cutting down on holiday gifts (tangible gifts).  Birthdays should be about celebrating life.  Valentines day should be about love.  Give the gift of experience.
  • Choosing Family:  making family dinner a priority 1-2 times a week for improved psychological well-being.  spending time with the children unplugged from social media.  learn a new craft/hobby.  READ.
  • Choosing Health:  choosing healthier meals.  cutting back on empty snacks.  COOK TOGETHER.
  • Choosing Outdoors: trading screen time for outdoor play. learning to respect the environment.
  • Being a Conscious Consumer: thinking before I buy.  Allowing three days to pass by before I make big purchases to make sure that the item is something I really want.  Only buying toys the children earn and do chores for.  TEACH CHILDREN YOU DONT NEED TO BUY THINGS TO BE HAPPY.img_9923

Teach Me…

As I walk further into my journey, I realize that I am learning who I really am EVERY DAY.  There is no pennical to the knowledge you attain and the many evolutions you will endure to be incarnated. As a woman, I feel as if I will be born again many times; learning how to fill my own cup…and what exactly I will fill it with.

I watched a video by Will Smith and he stated that his wife, Jada and he, realized that they were two individuals on separate individual journeys learning and choosing to share a life together. He stated that it was not his job to make Jada happy, she had to do that for herself. Jada couldn’t make him happy, he had to do that for himself.

The false pretense of romance and the “we are one” sentiment can often distort a marriage. I realized this fact one night on a dinner date with my husband.  Not many people have the fortune of being born into a perfect family.  As he made points about his up-bringing, and made the claim that “all women were the same”,  I immediately became offensive. True enough, we both come from two totally different upbringings; I had the knowledge of both my parents and even though they were never together, my mother or grandmothers were always present while my father went off to college.  My husband on the other hand, seemed much more traumatized by his estranged father and drug abused mother.  I saw that parts of his up-bringing in foster-homes were internalized and love was totally different for him.

As a woman, I’m naturally seeking how to learn to love and be more nurturing, that’s in my nature.  Although I had both my parents, I was never showed a healthy relationship, what role a man should play in my life, or what “love” is.  I learned that night that my husband didn’t know what love was, how to go about seeking to be loving, and what love actually looked like.  All my husband knew was loyalty and support and for him, that transpired into love and care. Marriage was in some way, an obligation that he owed to his children and at that moment I realized I didn’t want to be an obligation to him because I was the mother of his children.  I wanted to be in a marriage because we were irreplaceable to each other. I was furious until I realized that I could not depend on him to make me happy because some days, he just won’t. He won’t give me butterflies everyday and he won’t always say the right things.

I think that women often get romantic concepts from movies and want our love to be this magical love story.  Great sex, trips, date night, romance, and well-behaved children is not the full picture of an actual marriage.  In order for “Us” to work, I had to be able to focus on my goals and make time for me to be an individual and so did he.  As long as trust was not a question, we owed it to ourselves to figure out what makes us happy and be able to pursue it with the support of one another. We each deal with emotional wounds but learning to get beyond those and to the honest truth of our marriage will be hard work.

Our marriage is a living breathing organism.  It is vital to feed it and nurture it because “love” is a lot of work.  If I went by my husband’s “talk”, we would never make it. Instead, I use his actions to tell where his heart and mind is because he is not a natural born nurturer.  The next day after our date night, I decided to learn how to connect with him and be patient (and ladies it may take a lot of patience LOL).  If your husband is willing and trying to be the man that you need him to be, understand that you may have to teach him a few things and be willing to learn some things (even things you may not want to hear).

DON’T JUST SURVIVE IN YOUR MARRIAGE, PROSPER IN YOUR MARRIAGE.

I love reading a males perspective on marriage and finding activities to try with my partner.  I included a link below to a great article (it is a series)  that you ladies/men may find helpful!

via Pt. 1: How to Get Exactly What You Want From the Man in Your Life (Teach Me…)

Books by Black Authors That You Don’t Want to Miss This Year

If you are an African-American fiction-novel fanatic like myself, then you’re hankering for your next book-fix. In these winter months, I’d rather curl up with a hot cup of mixed berry hibiscus tea and read. I’m currently reading the great Tayari Jones An American Marriage, and it is everything I am looking for in a novel right now. In Jones’ cross-examination of race and incarceration in America, the lives of newlyweds Celestial and Roy are at a turn just 18-months after their nuptial.

Photo credit: Amazon.com